Quote to Note

"Never, for the sake of peace and quiet, deny your own experience or convictions" ~Dag Hammarskjold 

UN Secretary General 1953-1961

Dag Hammarskjold image by www.daghammarskjold.se via google images

It's Time For The Family Reunion

This week, I heard from my dear friend. A friend that I would do anything for. A friend that I have laughed with, and cried with. A friend who has never failed to be a source of support for me and so many others. Who selflessly, tirelessly does so much for so many, and never asks for a thing in return. She is the mother of a special needs child. And she is my inspiration.

We have had long conversations, and short ones. Talked about kids, men, and injustices of life (most of which involve the cleaning up of poop). We have cheered for each others' children and worked together. She is my "Go-to" person when I need sound advice from an advocate's stand point. You all have seen her work here. You have seen my work on her site. You may know her well, or not at all. She is the phenomenally talented Gina St. Aubin of Special Happens.

Because her writing is second to none, I'm going to let her tell the story, and then go on from there. She is writing about her son, J. And it is ONLY with her permission that I am publishing this very sensitive, very raw, very real excerpt. Read on:

We’ve had a series of appointments in the last two weeks.  PET Scan and MRI (both under anesthesia), NeuroPsych, 2 days of infusions, a LONG appointment meeting the Rehab doc, NeuroPsych again, one of two neurosurgeons and our epileptologist, and the then second neurosurgeon today.  They have had what they call a “conference” and presented J, his EEGs, all testing etc to 20+ doctors, therapists, social workers and more tonight.  

Honestly within the last 2 days, we have been hit with a couple of bombshells that have literally knocked us back and taken the basis of the genesis of all of J’s diagnosis and turned it upside down.  We are taking some time to absorb it all, so if we don’t respond, please don’t think us unappreciative… we are just… overwhelmed to a new level with the enormity of decisions we have to make. 

To make it simple (which it's not), here’s the gist:
It has been said, since J was 9 months old that he had an intrauterine stroke.  It was explained to us by a neurologist that he could see that it was within the 1st trimester because of the development of J’s brain on the left side.  It was explained that it was the left frontal lobe only.
It’s not.

 The MRI shows that the ENTIRE left hemisphere of J’s brain is malformed.  All of it.  There is absolutely NO indication of an intrauterine stroke.  It also did not happen at birth.  It looks to be the true example of “sometimes these things happen”.  And, quite honestly, a miracle that he's here...and functioning as well as he is.

The EEGs have been showing his seizure activity as focused / limited to one area.  That’s not so either.  It’s actually the entire left hemisphere that’s not only malformed but is also constantly seizing.

 One significance of this, besides the misdiagnosis, is that *that* misdiagnosis has lead us and J down a wasteful road that NO medication...NO medication would have EVER touched the epilepsy because of the malformation.  He would have had this subclinical epilepsy since a young age...likely since the age we starting asking doctors why he wasn’t sleeping… 1.5 - 2 years of age.  

Since NO medication will have (or will ever) work because he has a malformation of the entire hemisphere, surgery would have been his only option - this whole time.
Herein, the surgery….the surgery is necessary to stop the left side from it’s constant seizure status.  100% of his days and nights are in subclinical seizures.  Eventually, the one medication that’s holding them to a subclinical level will wear out … again because NO medication will stop it … and J will then be in a full blow constant outward (clinical) seizure.  That - again - no medication can stop

All the activity that this left hemisphere is doing is also keeping the right side (presumably healthy) from functioning properly.  The longer the left hemisphere is there being ‘busy’, the higher the chance the right hemisphere has of taking on the subclinical or clinical seizure activity.  In other words, in order to keep the right side healthy, we have to stop the left side.
Which means…

The brain surgery that we once thought was so serious has become even more serious.  Where we thought we were having to take a sliver of an already unhealthy (but small) section of a hemisphere out…
We have to disconnect the entire left hemisphere from the right.  

That means, a piece of his left hemisphere would be removed in order to reach the central connections (center) of his brain where they would disconnect the two halves.  It’s called a Hemispherectomy.

He has been approved for this operation this evening.  However, the conference doctors have requested that the entire team sit down with us one more time and really go over the pros and cons.

Obviously there are a number of side effects and possibilities.  These are all being weighed out.  In the end, the choice we are faced with is to watch him deteriorate slowly, eventually needing this brain surgery or a brain surgery that also involves removing a portion of the right side too… or give him a chance.

It’s late tonight. We’re exhausted.  I’ll email the rest...but basically, we will be looking at 3 days to 1 week in ICU.  2-4 weeks of intensive rehab IN the hospital Monday - Saturday, then another 6-8 weeks of intensive rehab at home.  He will be lethargic.  He will be unable (and likely un-wanting) to swim, jump, run, play…).

We won’t have a date until after we speak with the team again, which is thought to be able to happen early next week.

Please rest assured that this decision is not light, but the heaviest, most difficult, "unfair" decision we can make.  This has been reviewed heavily by the ONLY 6 pediatric epileptologists in our state, a number of neurologists, a neuroradiologist, all neuro-whatevers, therapists, 2 neurosurgeons... this is not a fast decision.  

J is now 9 years old. And he will be undergoing major brain surgery very soon. This summer, in fact, though the exact date is unsure. It goes without saying that you will be reading a lot more about J in the weeks to come. Since this email (written 5/15) was sent, many have expressed a desire to help the St. Aubin family before, during, and after the surgery takes place.

This is something that will affect their entire family. And here's what I know. I know that the special needs community via blogs and social media is strong. I know that this community is a family just as much as any family is. And it's time for a family reunion. It's time to band together again. To show our strength, our support, our love and friendship. It is our time to shine. We've had a nice hiatus, now it's time to get back to work. 

We have done this before. We have really made a difference. So there's no question about whether we have the means necessary to be successful. We all remember Deeds. We all fell in love with him and his family. This time, it's even more important. There are things that will become necessary while J is in the hospital. Things that will have to be taken care of that Gina and her husband will be unable to accomplish, because they are taking care of their child. That's where we come in.

Over the next week as plans take shape, I will post and ask for help. Other bloggers will post and ask for help. I will ask every blogger I know to consider posting about the St. Aubin family's story on their sites. I will ask their readers, my readers, and Gina's readers to leave messages of comfort and strength. I will ask for... everything. Because it. is. necessary. This family needs the support we have to offer. And I won't apologize for asking. 

At Gina's request and mine... please keep them in your prayers. Whatever your religion, whatever your opinion, they need peace. They need comfort. If you have ideas, or questions about efforts to be made on behalf of the St.Aubins, please don't hesitate to toss me an email at frazzledmomma@livingwithlogan.com.

Images in this post from the Google

Dearly Beloved, We Are Gathered Here Today...

Dearly beloved, we are gathered here today, three bloggers together, to address a serious issue that has become so commonplace throughout social media for special needs parents and the special needs community as a whole, we aren't shocked when it happens anymore. Please welcome Jill from Yeah. Good Times., Lisa, the Yuckmouth Mommy from 7 Yuckmouths and Autism, and Caryn, from Living with Logan. This post will go live simultaneously on all three sites today, because we are united in our desire to get the word out. Please help us in this effort, and pass it along.

The issue, as you may have guessed, is the frequency with which the special needs community is getting scammed through false organizations and individuals, who prey on our desire to help our children. We've put together a little dialogue that we hope will be helpful in learning to protect ourselves as thoroughly as we protect our children. The truth of the matter is this: if we don't protect ourselves, no one else will. Each comment will be followed by the initials of the author, and we welcome comments and questions from all. Please be respectful in your comments, or they will be deleted. There is enough drama and cat fighting. We don't need more.

And now, welcome to our conversation!

• Do you think the Special Needs Parenting Community as a whole is vulnerable to cyber scammers?

Yes, I do. I think we are easily targeted for a number of reasons. We are fighters. We are strong. We have to be so, to advocate for our children. People desiring to scam us love this attribute, because they don’t have to teach us to work toward the goal. We are focused, as every parent is, in getting whatever our child/children needs. We hit so many dead ends, we are told “No” so many times in so many different ways that we love it when someone says yes. There is a veritable target on our backs. I don’t mean that we are stupid. Certainly we are not. We are intelligent, we work hard, and we fight for what we believe in. And, let’s face it, people. We like to talk. If we find something we think is awesome for our kids, it’s all over the twitter and the facebook the very same day. What scammer wouldn’t love any of that?! Not only that, those of us that blog are only too happy to blog about our good fortune, because we want others to benefit as well. This is a win/win for a scammer.  People who will promote online, at their own expense of time and effort, with no cost to the scammer but one or two iPads or a couple of apps, and then they never have to make good again. They already have all the good exposure they need.  It’s scary how easy we have made it for the slime balls of the internet. CH

• What are some “red flags” that somebody might be scamming you. Jill

Generally, I follow the “if it sounds too good to be true, it usually is” rule. Someone asking you for money when offering a “free” product or service such as purchasing a raffle ticket or forking over a nominal fee to “keep your reservation valid” is a sign of a scam. Likewise, someone asking you to write a blog post, collect donations, or generate votes to qualify your child for a free service dog, for instance, is a sign of a scam.  CH

Trust your instincts. If it doesn’t feel right to you, it’s likely that it isn’t, so ask questions. Who are these people? Where are they located? Do they have any other sources of funding? Do they have (valid) testimonials and references? A huge red flag is if you ask direct questions and consistently do not get direct answers. If they can’t provide you with valid financial information, or they refuse to provide any personally identifiable information about themselves: be careful. Scammers are like politicians; they will talk around the issue, touching on their key “talking points,” but they will rarely ever actually answer your question directly. A reputable organization will be easily able to provide you with whatever you need to know to prove their validity. Jill

Also, anybody who requires any money from you, in any form (i.e. directly from you, solicited by you, etc.) before you can proceed with an application process is definitely scamming you. Trustworthy organizations will not require that you pay to complete an application process. Jill

• How can you protect yourself?

I’m sorry, but someone offering a “free” iPad or service dog or therapy or miracle “cure” for autism just doesn’t ring like the real deal to me.  I’m a BIG believer in doing my homework. Read the fine print. What strings are attached? What commitments are they asking from you? Are they registered as a 501 3(c)? If so, have they been reported at any time in any way? Are they registered with the BBB? Is it a company, foundation, or individual? Are they based in your country or somewhere you’ve never heard of in Bangladesh? Do they offer transparency if they are a donation based company? Will they provide statements to anyone who asks? Are the founders or other officials easily accessible to their followers by chat, message board, email, facebook, twitter, or corporate phone number? Is there a message board/review panel of any kind for feedback from people who have worked with this person or company in the past? Does the person or company bash other similar entities regularly? These are questions you should ask yourself before becoming involved with ANY internet based company or foundation. CH

• What to do when you have already been scammed, or private info has been published on social networking sites. LG

There are many ways to protect yourself on facebook and twitter. Both sites have very firm TOS (Terms Of Service) in place to protect their users, its just a matter of finding where to do all of this. LG

First you can report any and all comments you feel are attacking you in any way. You need to make sure that you first screen shot for proof later because once a comment or post is reported it is removed.   I find it much easier to watch a video of what I should be doing and this google search has all the info for how to screen shot on various devices. LG

On twitter there is a way to report people twitter has a really handy page that is clear as how to report a number of violations of their TOS. In addition you have to give them the url to the post so make sure you click on details in the tweet, that will open to a new page and give you the url to give to twitter. LG

On Facebook you can find out lots about your account in your general account setting tab. From there click on security settings. On that page is a wealth of info in regards to what, when and who has had access to your account that you may not have known about. LG

From that page it is easy to click on the help button towards the bottom of the page, there you can report violations from harassment,  to copyright infringement, and intellectual property infringement. Because even as a fan page you have rights on facebook just like everyone else. LG

For more information on cyber crimes, how to report them, and definitions of cyber crimes, please visit the following websites:

Cyberstalking: What it is and what you can do as a victim

Computer Crime and Intellectual Property Section of the United States Department of Justice

What Are Your Legal Rights?

Image in this post from Google images

Overdosing on reality

Remember the other day, when I did the Hero of the Week? And I told you all about Dani, a special needs Momma who also has the evil cancer? Well, she's posting  about her doses of reality over on her blog today. Because I heart Dani, and respect her, I have decided that the best way I can support her is to help her voice be heard. So, my wonderful, awesome, incredible, loving, supportive addicts, CLICK HERE to extend some of your amazingness back to her. You won't be sorry. And also, if any of you have any kind of information for resources for her, please ~ I beg you~ share with her.

We are a community of parents helping each other hurdle those pesky mountains life keeps throwing at us. I have seen first hand what miracles can happen when someone extends a need. I've seen it for Deeds, and I've seen it for me. We are strong, we are fierce, we are each others' cheerleaders. Without the support of each other, where would we be? Life is too short, people.

I don't know how to help Dani best. Do you? If you don't, do you know someone who does? A wise man once told me, "Caryn, you already know the people who can help you. You just haven't asked the right one yet." Are you, or someone close to you, the person who can help my hero?

Image by msnbc, via google